Hypoparathyroidism and the Patient Journey for this Rare Disease

In support of World Hypoparathyroidism Awareness Day 2020, I worked with a biopharmaceutical client and the HypoPARAthyroidism Association (HPA), a US-based non-profit organization, to develop and launch a campaign to raise awareness of this rare disease.

Social media post for World Hypoparathyroidism Awareness Day. Source: HPA

World Hypoparathyroidism Awareness Day

World Hypoparathyroidism Awareness Day falls on June 1 every year. It is a day dedicated to educating the public about hypoparathyroidism (HP), a rare endocrine disorder characterized by insufficient levels of parathyroid hormone, resulting in low calcium and elevated phosphate levels in the blood. These imbalances can lead to a wide range of physical and emotional symptoms, as well as severe long-term complications related to calcification in the kidney, brain, blood vessels, eye and other soft tissues.

The Voices of Hypopara Patient Survey

The core of the campaign was the Voices of Hypopara Patient Survey, which highlighted the experiences of patients with HP. We worked with the HPA’s leadership team to develop the survey questions, focusing on patients’ experiences with diagnosis, treatment, quality of care, and impact on daily living. The online survey included responses from 146 patients.

Results identified important knowledge gaps and treatment limitations, and brought to light the complexity of the HP patient journey. Key findings included the following:

  • It was difficult to receive a diagnosis – for half of the participants, it took more than five physician visits, and for a quarter of them, more than a year before receiving a diagnosis
  • Almost all participants were concerned with managing daily HP symptoms and minimizing long-term complications
  • In the past year, more than two-thirds of patients experienced a calcium crash – a potentially life-threatening decrease in calcium levels – and almost half visited the ER or urgent care to address their HP symptoms 

Below is a fact sheet we created to present the survey results (source: HPA). For more information about the survey, please visit the HPA site.

We employed a variety of tactics to broadly communicate the findings:

  • Issued a press release to announce the survey results
  • Developed social media content for Facebook, the HPA’s primary social media site
  • Created educational materials, including a fact sheet, infographics, and patient video clips for the HPA website 

Raising Awareness of Hypoparathyroidism in the Medical Community

The survey conclusions were compelling, so we drafted a scientific abstract of the results and submitted it to the American Society for Bone and Mineral Research (ASBMR), a professional organization for scientists and physicians involved in treating bone and mineral diseases such as HP. The abstract was selected for presentation at the society’s annual meeting – an acknowledgment by the medical community of the importance of understanding the HP patient experience.

ASBMR 2020 Poster Presentation. Source: HPA.


Overall, the campaign was a success. The patient survey revealed the physical and emotional challenges patients with HP face – from diagnosis to managing daily symptoms to facing long-term complications. These findings were communicated using a variety of tactics, resulting in increased visits to the organization’s website and increased engagement on their Facebook page. Importantly, the survey results were selected for presentation at a premier medical meeting, extending the reach of the campaign and its key messages to the medical community.


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